Tamara Real felt so alone when her husband, Carl Rinne, a retired U-M professor, was given the diagnosis for a disease they had never heard of – Lewy Body Dementia.

“We were told to come back in a year. We received no information, no place to turn to for support,” Real said. “I felt like my whole world had caved in.”

She resolved that others should not face the same uncertainty about a disease that often goes unrecognized by medical professionals.

Real’s vision has been realized with last week’s launch of the Carl Rinne Lewy Body Dementia Initiative at Matthaei Botanical Gardens attended by people with LBD, their care partners, community members and healthcare professionals.

This initiative will help others in Michigan who face a future with LBD, educate healthcare professionals and build public awareness of one of the most common forms of dementia. It is administered by the Michigan Alzheimer’s Disease Center (MADC).

“I give Tamara Real tremendous credit for recognizing that there was a gap, in awareness of the disease and support for families impacted by it,” said Henry Paulson, M.D., Ph.D., director of the MADC. “We are expanding our caregiver and patient support groups around the state, we are going out into the community, bringing in speakers, and creating new materials because of this wonderful gift.”

The key element of the Initiative is supporting families affected by LBD. Currently, there is a very active support program in Ann Arbor. Not only is there a group for care partners, but there also is a support group for those with the disease, the first such group in the country.

Care partner Diane Saulter and her husband Ken Saulter, who has LBD, spoke at the event.

“I can’t imagine how much more difficult this journey would have been without the support and understanding, questions and suggestions, thoughts and feelings shared among the caregivers in the group Tamara began. No one can understand better what it’s like to live with someone who has LBD than another person who is in the same situation.”

Dr. Paulson explained that the families in the support group will help set the framework for the initiative. “Their voice is very important. They are helping us learn what it’s like for families affected by this disease, and we appreciate their involvement.”

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